International Waldenstrom’s Macroglobulinemia Foundation



The latest IWMF Fact Sheet on Human Intravenous Immunoglobulin (IVIG) Replacement Therapy continues to draw a considerable amount of interest among the WM community. There is concern regarding the growing need for IVIG replacement in patients with blood cancers, including WM. Not only does WM itself lead to lower immunoglobulin G levels, but most of the old and newer treatments do so also. As a result, the need for IVIG will continue to be an ongoing issue.

In order to gain a more definitive insight into the usage of IVIG among WM patients, WhiMSICAL investigators were asked to interrogate the registry’s data. Based on the details recorded by WM patients in the IWMF WhiMSICAL Registry, 46/335 (14%) of WM patients recording transfusion details have received IVIG transfusions (see graph below).

Given the high cost IVIG replacement (USD 40,000-50,000/year), 14% is a significant proportion, placing a burden on patients and the health system at large. This snapshot analysis is very informative, but may not represent the entirety of the issue as 65/400 (16%) WhiMSICAL participants did not answer the Transfusion question.

To help researchers more accurately gauge the magnitude of the requirement for IVIG replacement, all WM patients are encouraged to update their IVIG transfusion details in the WhiMSICAL WM Registry. In addition, it would be timely to update all other details, particularly in relation to treatments in question 9, blood test results in question 19, and of course, your quality of life updates in question 20.

NOTE: It is important that WM patient details recorded in WhiMSICAL are updated before October 7, so that a research manuscript can be submitted to contribute the power of the patient voice to the growing body of WM data in leading haematology journals.

Any WM patients not already in the IWMF Registry are encouraged to join at the CART-Wheel site HERE (link is external)

Information about WhiMSICAL Registry is HERE(link is external)

For clarification on any points, send an email to [email protected](link sends e-mail)



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